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    #16
    Hi Chas,

    Firstly, make sure you get an alternating air mattress, not one in which the mattress is just filled with static air. I cannot turn in bed but sleep pain-free and very comfortably all night on a weight-adjustable, alternating air mattress. The interval between the alternating air cycles can be set according to your needs - mine has a range between 30 secs and 5 mins and I've mine set to alternate every 90 secs.

    I can't see why you wouldn't be able to turn on an air mattress if you have the ability and means to turn on your current one, but maybe I'm missing something?? They're not jelly-like. If you've strength in your arms, you could use a bed rail to assist you.

    Do you take any antispasmodic meds at night, e.g. Baclofen?

    Hope you get relief - a good sleep is important for us!!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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      #17
      Hi Ellie,

      Thank you for the information - I'll have a chat with the OT about the air mattress next week when she calls in. I think I'll be able to turn as I do now - I have a bedhead with rails that I use to grab and turn - works well with bed sticks. Sadly arms are - especially the right one - is much weaker now - but fortunately the left arm is my wine drinking arm Legs have gone south a long time ago. However - NHS doesn't supply double bed size air mattresses - I currently use a double bed because I can't turn in my own space and therefore roll from side to side. I tried a profiling bed but was way too narrow for me to roll/turn. I use a small double bed for now.

      I am trying to get the NHS to supply a bariatric bed - it is wider and will give me that turning option. I only weigh 90kg if I'm lucky

      I take Amtriptyline at night - varying dosages tried - but I have settled for 2 at night coupled with co codamol - sort of works.

      I am putting my daytime weakness down to lack of a good recovery sleep at night - but suspect it is just a progression of the 'Stephen Hawking Syndrome'

      Regards

      Chas
      Last edited by Sportingmac; 14 June 2018, 10:41. Reason: spelling

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        #18
        Don't underestimate the benefits of a good quality sleep Chas!! It makes for better days, which, for us who need every bit of energy we can get, is important - not just a Brucie Bonus So, whether it's pain, breathing, anxiety or whatever that stops us getting good quality sleep, fixing the issue reaps rewards!

        I wondered if the pain in your thighs is due to high muscle tone? It's a big muscle and, particularly if you've been in a sitting position for most of the day, might not like being stretched out, impacting on your hips and groins too. That's why I suggested Baclofen - of course your doctor would have to see how your tone is first.

        Glad your wine glass hand is still up to the job

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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          #19
          Oddly - my leg muscles are all floppy - sad degradation from the legs that were used for 100/200/400m sprints and long jump. I tried Baclofen for a while - didn't seem to do much for me at the time - might try again - see what happens.

          I get a lot of reliegf from stretching out in bed - when I can my legs into position to push straight. Top tip: use leg garters (knee straps from amazon but used above the knee instead of below - if you can see what I mean) to manipulate the legs into any position that is comforatable - and they help me get out of bed too in the middle of the night to go to the loo. That is risky to say the least - but next Tuesdays op will fix that issue.

          My mattress is past its sell by date I think - has a dip in teh middle - so a new one is required - hoping that will help with the hip pain.

          Time for a night cap

          Chas

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            #20
            I’m having a lot of pain in my ankles, hips and sometimes knees in bed, I don’t want to take beclofen as I’m not adequately homed and don’t have the lifting equipment to not be able stand which beclofen makes my leg muscles relax too much, Does anyone know if CBD oil will help, has anyone tried it, if so, any side effects I need to be wary of, hope everyone are staying safe out there xx

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